Update of 50 things for 50 years.

Updating my list

1. Read 50 40 books in the year. Doesn't matter what type but as long as its 50 and I will be able to keep track with my new kindle.
2. Do another cooking class. At least 1 but hopefully 2. So far done 3, one of which was with Jamie Oliver
3. Go on a holiday, hopefully to Melbourne. I was last there in 1984, so just a few years ago lol
4. Go to a horse 'cup' day
5. Go down another 20kgs
6. Get a lot more writing from my autobiography done - Been doing heaps of that
7. Have lunch or dinner at Bretts wharf or Aria Brisbane
8. Go through the glow worm caves at Springbrook hopefully when the glow fungi is out as well or the fireflies
9. Do a charity event - with not a lot of walking done today MDAQ walk
10. Have a tarot reading
11. Go to a musical (booked for Jersey Boys in July)
12. Go to gold class movie
13. Go on a cruise - booked and leaving in April
14. Get a fish - either fighter or gold fish or two. When I was single I had 2 goldfish, 1 black and 1 gold called Abraham and Lincoln lol (Ryan is giving me this for Mother's Day)
15. Go to a zoo
16. Go to brisbane city markets
17. Brisbane's koala and river cruise
18. Toowoomba carnival of flowers
19. Attend a dawn service
20. Go to Q1 lookout
21. Have a flying lesson - Changing this to do the flight stimulation first, then maybe a flying lesson
22. crystal castle at mullumbimby
23. do a cross stitch
24. have a facial Have had a couple now 
25. have a massage Have had two of these so far, one being a hot rocks one
26. try a new food Tried dragon fruit and poppadoms and some vegetarian dishes so far.
27. aqua aerobics classes.  Done and going to do more
28. be part of a flash mob - now where does someone find these people
29. Drive a convertible with the top down and music blaring.
30. Get family tree in order - got heaps of this done
31. Go on a retreat
32. Go to the comedy club 
33. Play blackjack at the casino - must remember to take extra shirt to lose since I have never played it lol
34. Swim in the ocean - haven't done this for many many years
35. Go to an opera or listen or an opera singer - don't know if I could sit through a whole opera.
36. Spend a night at maleny/montville
37. Hold a snake - to overcome a fear (Went on the Brisbane wheel to overcome fear of heights but had to get off, so only went around once. Never again lol )
38. Attend the good food festival
39. feed the homeless - was looking into this a couple of months ago but didn't do anything about it. (contacted agencies but none have gotten back to me yet)
40. do a belly dancing class - well I have enough belly to wobble haha
41. try a new drink
42. queen mary falls walk
43. drink a cocktail - last cocktail was in about 1979 and it was a fluffy duck and its the only one I have ever tasted.
44. host a murder mystery dinner party - have the game here, now to organize
45. Put $5 a day into money box - use it for something special at the end of the year. - been doing this 
46. Have a games night with friends
47. Put $50 on black at the casino for my first and only bet at the table.
48. Trike ride from Gold Coast to Mt Tamborine wineries
49. Ride on a carousel
50. Have a kick arse birthday party (venue, dj, food sorted. Decorations started) 

Replies to email

I had put up a copy of an email that I had sent to those running in the state government elections. So far only one has replied.  Am thinking that they don't have anything in this election to offer carers, or maybe I have read it wrong.

Thank you Mrs Czernia for your email  

I have made some enquiries to ensure that I provided as much info as possible. 

As you may know:

·        Carers Queensland received $2.492 million in 2010-11 to provide counselling, support and advocacy services to carers of home and community care clients. It also provides education, information and training about carers’ needs for Home and Community Care service providers.

·        Additional funding of $1.21 million per annum was committed to eight organisations in 2010-11 to provide regional counselling, support and information services for carers. $534,000 of this funding was allocated to Carers Queensland.

·        In 2011-12, $4.2 million is provided to 22 respite service providers across 25 locations to provide respite to older parent carers and assist with transition planning. Respite provided by this initiative includes in-home support, centre-based respite and community-based support. In some locations, emergency respite and other flexible respite options are available

·        As of February 2012, a total of 113 people with older carers have transitioned to a place of their own under the Disability Assistance Packages since July 2010.

http://www.communities.qld.gov.au/disability/support-and-services/carers/support-for-carers)

The Queensland Government is committed to recognising and supporting carers, with the following initiatives introduced to support carers in their caring role:

·        the Carers (Recognition) Act 2008 (Carers Act) (PDF) recognises the valuable contribution carers make to the people they care for and the social and economic benefit carers provide to the community. The Act sets out requirements for public authorities to recognise and support carers through services to carers and the people they care for, and also for employees of public authorities who undertake a caring role, specifically through:

·        the Carers Charter (PDF, 344 KB) Carers Charter (RTF, 12 KB), which contains 13 principles recognising the significant contribution carers make to the community

·        the establishment of the Queensland Carers Advisory Council, which advises the Minister on matters relating to carers and works to advance carers’ interests. The Council has 12 members: four carers, one of whom must be a grandparent carer; three carer association representatives; one member who represents grandparent carers; and four public servants. A Council Communique (PDF, 134 KB) (RTF, 70 KB) is produced and available on the website following each meeting.

·        The Carer Business Discount Card is a concession card that provides eligible carers with discounts on goods and services from participating businesses. This scheme is a partnership between the state government and businesses across Queensland.

·        The Companion Card promotes fair ticketing for people with a disability who need significant assistance from a companion to attend activities and venues in their community. This card will enable people with a disability to have the same opportunities for participation and recreation as other community members.

·        The Office for Carers is Queensland’s main government contact point for carers' issues. The Office actively engages with other government departments, non-government organisations and the community to raise awareness about carers and embed Carers Charter principles in government and community activity. It also provides secretariat support to the Queensland Carers Advisory Council.

·        The Queensland Government Carer Action Plan 2011–2014 is another important mechanism to support carers. It builds on the report Review of the Queensland Carer Action Plan 2006-10 (PDF, 163 KB) (RTF, 336 KB) which outlines the progress achieved through the Queensland Government Carer Action Plan 2006–2010 (PDF, 271 KB) Carer Action Plan 2006–2010 (RTF, 55 KB). To order a printed copy of the Carer Action Plan, call the Office for Carers on 1800 177 120 (toll-free within Australia) or email: officeforcarers@disability.qld.gov.au.

For the first time, Australia has a National Carer Strategy—the second element of the Australian Government’s National Carer Recognition Framework. The National Carer Strategy strengthens the Queensland Government’s commitment to recognise and respond to the needs of carers; and to support carers having rights, choices, opportunities and capabilities to participate in economic, social and community life. The priority areas in the Queensland Carer Action Plan 2011-14 align with the National Carer Strategy.

I know how difficult things can be in this regard and as such I hope that this information is of use to you?

Thank you for raising this matter with me.

Our adventure and how we turned into burglers

Knowing Ipswich was about to flood and anticipating a shortage of basic food, we made sure we stocked up just in case we couldn't get out. Also thinking we might lose power for a short while at some stage I boiled the jug, filled the thermos and we had the candles ready. Most of this was done by Monday evening.

Now you think your prepared but suddenly Tuesday we realized I had forgotten medication. Racing out and trying to find a chemist open which we luckily did after visiting about 4 of them. This was around 3pm. 

That night at around 9 the power went out. Our neighbours still had theirs, as they are on a different grid to us. By morning they were also out. We have a small generator for times like this to get Ryan's ventilator going, so that was all good. 

The next morning we got a radio going.... tip for people if you need D size batteries and don't have any, you can get 2 A size and wrap masking tape around them and they will work instead ( might have to start up a handy hints show lol ). All the men, as they do, convened out on the road to talk over the latest events. Noticably absent was our neighbours. A call to them and they had gotten trapped at their rental they are doing up. We asked if we could borrow their generator since it was bigger than ours and might run the fridge. "Yep no use to us". 

We got the generator and put it on our fridge for a while, then it went to the other neighbours, then up the road to Peter's boss. The whole neighbourhood was sharing generators between 3 or 4 families. I have never seen our street so busy with foot traffic haha. 

Our neighbour was worried about her cat and asked for us to go and buy some food to feed it. That wasn't happening as all shops had closed and weren't reopening any time soon. So the cat was going to get my John West tuna (yes Leanne I was going to feed it, not kill it or feed it to spanner lol ).

That morning when I had rung the electric company they said power would be on by 6am thursday. At lunch time it had gone to 3pm Friday, then 5pm Friday, then 5pm Monday. So everyone started getting desperate to save their food.

Unforunately the generator just able to keep things cold. So then it was everyone trying to share what they had before it went off. 

Troy and I went and took some of the pics I put up and found a way out of our area - although we still couldn't go that far. Petrol stations had run out of petrol and ice, it wasn't until Thursday we could get some when the roads opened up a bit after the major flooding.

As soon as we could get out we went to Peter's mums and had a shower and washed hair haha. The simple things were what we wanted. We charged our mobiles - not that it was much use then as we didn't really get service until Friday due to dropping in and out and us having no home phone service.

Floods bring out good and bad in people. A lot of people were stranded at our local shops unable to get home. They were sleeping in their cars. When hubby went up early wednesday morning he offered for those there to come back to our place. They decided not to but went to the evacuation centre, which had power. But when saying to a person in the area about it, their reply was "but they would eat your food". I'm sorry but I don't get this attitude. I also don't get how some shop keepers could charge $10 for a loaf of bread or $20 for milk. This was on the radio with people complaining about the costs.

Thankfully the good override the bad though. We had lots of laughs, wine and bbq's with neighbours. Shock at friends who have lost everything as their houses went completely under in Karalee. Its as Ryan said, we have food, our home and each other. A lot more than some have. He said it was like camping at home lol.

Oh now if your wondering how we became burglers. Our neighbours still can't get home. Feeding the cat, hubby noticed the liquids coming from the fridge due to food rotting and the smell. Knowing we had to get in, we found a way to break in and clean out their fridges, freezers etc. When I rang and told them they were so grateful. It was the one thing they were dreading as a friend of theirs had gone home to find maggots everywhere. The relief in their voices was so worth break and enter lol. 

For now Black Hawkes flew in a big generator for our area, which hopefully will last until they can fix the problem with the transformer. Until it is though, we won't be buying any food to stock up the fridge and freezer. 

Unforunately Jade's work went right under water and until they can get it up and running again she is out of a job. The agency Troy has his appreniceship through is also flooded and not working for a while yet. Thankfully the government has set up help for them and those like them. 

Do you remember when ...

I not only remember when people did not have mobile phones but also when hardly anyone had a home phone - you used the phone box to ring the luckly ones that did - and I even remember using phones that you wound the handle and spoke to an operator. :o

I remember black and white tv. Saturday nights were spent watching Walt Disney welcoming you and seeing innocent family movies. Sunday nights was watching Molly Meldrum and countdown so you could talk about it at school the following day. Tammy, Gidget and Doris Day were our 'role models' on tv.  Who could forget the Leyland Brothers followed by Alby Mangles in later years. TV usually closed down around 11 and the Queens Christmas message would stop a nation.

The cinema showed shows like World Safari, and a trip there with school would mean watching Lord of the flies not Harry Potter. Your price also included 2 movies not 1. There were Jaffas to roll down the isle or throw over the balcony. Then came Rocky Horror, Rocky Balboa and Aliens.

Drive ins were everywhere and you could smuggle your friends in by putting them in the boot. Choc topped icecreams were the go and mattresses in the back of panel vans were the go.

10 cents worth of lollies was more than 1 lolly, hell it was more than 10 lollies. You got free milk at school. The majority, not the minority of mothers helped at the school tuckshop. Working b's meant parents turned up to help. 

Teachers smoked in the classroom, teenagers smoked in the cinema, in fact people smoked everywhere.

All kids would go out playing and come home when hungry and before dark. We would go bike riding, horse riding, yabbying, swimming and just general play.  The baker, milko, fruitman and softdrink man all came to your house. 

I remember ipods, cd's, cassettes, 45's, 33's and even 78's. Dvd's, tapes, and when your choice was Beta or VHS. 

The ensuite, the bathroom with separate toilet, the flushing toilet in a room on the verandah, the outhouse.

Milk in bottles with silver foil lids, real cream milk that you had to shake to mix before drinking. Milk in metal buckets or in the tins at the end of driveways waiting for the factory to collect it. 

Everyone played sport, everyone had a veggie garden and every child walked or got the bus to school. 

I have lived through flares, ponchos, tartan, cheesecloth, taffetta, long boots, short boots, riding boots, jesus sandals, joggers, sandshoes, stillettos, ballet shoes, thongs, minis, maxis, big hair, permed hair, short hair, straight hair and most have returned at some stage or another. 

Everyone older was Mr or Mrs or Aunt or Uncle. Every suburb had a least 1 corner store, service station, phone box and mail box.

Stores closed at midday Saturday and didn't open again until Monday. Nothing was opened on Good Friday or Christmas day. 

Trains use to have red carriages that had doors to benches that faced each other with just enough room for someone to stand on your feet in the middle at peak hour. You had nothing to hold on to and would constantly fall onto the lucky person to get a seat.

Dual lanes on the highway was when you indicated and overtook the person going slow in front of you. 

There is so much more and so many memories. 

A challenge for those strong enough to try.

Just moving some of the stuff from facebook to here that I have written.

Yesterday I had a phone call from a mum who had 2 boys with Duchenne Muscular Dystrophy - the same as Ryan. Her boys passed away over 20 years ago. We were talking about how some things hadn't changed in all this time. One of these things was understanding. How people don't seem to understand what it is like to look after someone with a physical disability.

Now this got me thinking and apart from me putting here what I do as a carer, I could get some of you to do something that Ryan's primary school use to get the kids to do.

Do this when there are 2 of you around and you can even swap roles at a later date. Now the only movement you have in your body is your hands... not your arms, just the wrists down. You can't even move your neck... but your mouth works fine. Now I can see you’re wanting to type a reply to me. You can, you just have to use the onscreen keyboard with your mouse. Don't have a mouse?? Well tough you can't reply then.

Now the other person that is there has to help you. Your leg is itchy or there is a fly on your nose - they have to scratch the spot with only you telling them exactly where it is, or they have to stay around shooing the fly away.

Your thirsty and hungry - they have to get you a drink and give it to you.... use a straw otherwise it will go all over you when they tip it. They have to cut your food, listen to you tell them how you want it and what order and when you’re ready for you next bite. Now let’s hope they get all the crumbs off of you and especially that one that went down your top and is annoying the hell out of you. 

Your arm is uncomfortable where it is, get them to move it back, out, over so it’s in a better position for you. I hope you haven't moved your legs yet, because where they are is where they are staying until someone helps you to shift them. And it better not be hot where you are. It is getting them to lean you forward so they can fan your top so it stops sticking to your body. 

Oh look there is a message on your phone... hold on, you can't look at it. You need someone to get your phone, hold it up in front of you so that you can read it. The same if you want to view a paper or book - someone has to hold it up for you and turn the pages. Hate what’s on TV or the radio atm, tough!! Unless someone comes to change it, it’s stuck there. 

Want to go to the toilet? Don't ever leave it until the last moment or try hanging on. You have to allow time to call out to someone and them to come, get bottle or hoist (depending on what you’re doing), move/remove clothing then you and go. Same with shower. You will get hoisted onto bed, clothing removed and then transferred to shower chair, wheeled in, washed by someone else, dried, hoisted back to bed to get dressed. If you then stay in bed you can't move. You have to get the other person to move your arms, legs, head etc to a comfy position. Then if you want to roll onto your side or back, you have to get them to do that as well. 

When going out you have to have someone with you all the time. You would never want to have any issues with privacy, because whoever is with you is going to know your pin number because you can't key it in and it’s ok to say you will use cash, but how are you going to get it without someone to do that for you either. 

Now if you can do even some of this with another person for an hour or 2, I can almost guarantee that by the end of that time you will have yelled at them for not moving something right or not being quick enough. But chances are you moved to do it yourself or show them and this isn't an option for someone with a physical disability. 

Then if you really want to get a good handle on things, set your alarm for every hour. Hop out of bed and walk to your spare bedroom or kid’s bedroom and then back to bed. That’s 1 night, try and see how many nights in a row you can go and still function the next day. 

Everything you do and every move you make during the day and night is something that Ryan and boys like him can't do. Everything you do and every move you make during the day and night is something that parents/carers have to do for them as well as their own movements and activities. 

Physical disability does not mean intellectual disability. 

Another thing I would like to add - If you see me (or any other parent/carer) and I am grumpy or unsociable. Its not because of something you've done. Its more likely that I am tired or worn out. I normally have 1 day a week  when Ryan goes out or weekends  and I can do things on that day which normally include such things as hairdressers, donating blood, catching up with friends, drs apts etc. Every time he goes into respite I end up spending the week doing the things I can't get done in that one day instead of resting. Peter is fantastic and helps heaps but also has his jobs to do, so can't be here all the time.

flying high

Wow!! That is how my last week has been. Nothing really explains it, except Wow.

It started with the girls coming over, the cruise being booked, another cooking class and then a phone call to say I had won a competition to cook with Jamie Oliver.

It didn't matter that I am to have more root canal and dental work done and it took my mind off worrying about Peter and his upcoming tests. Life just couldn't get better than this week.

I have felt like I was literally walking on air. At one point, Ryan even caught me skipping around the house, singing 'I won, I won, I won'. Yes I know, not a very good visual haha. But you know what ...... I don't care lol.

You know when you read a book or watch a movie and it says about everything looking different? Well for the first time in my life, that is how things are looking right this minute for me. The sun is shining brighter, colours are fresher and life in itself, seems lighter.

If you couldn't tell - and most friends could - I have really been struggling the past few months with coping. I had gotten to the point of wondering, how much longer can I cope with this. Yes I have been jealous of others my age and the freedom they have. I get to leave the house twice, sometimes 3 times a week, when Ryan is home (that includes grocery shopping). The constant demand of someone needing you 24 hours a day, is not something you can explain and unless people have been through it, they have no idea (and lets be honest. Most people in society don't want to understand).

And while I am on two different anti depressants and trying to get the right balance with them, this past week has done more for me, than they could ever do.

So yes, I am going to be crowing about it for a while and enjoying this feeling for all its worth.

Technology

Isn't it funny how times change and the things you live through. No one could imagine what the future would hold.

I can always remember having a television. A black and white set, then a colour and its only been this last year, that we have had one that isn't a foot deep. Of course don't forget that the first tv's didn't have remote controls - the remote was your legs lol

Our first 'stereo' that I recall, was a huge brown thing, in sort of a tortoise shell finish. It played records in sizes of 45, 33 1/3 and 78, and we had ones in all those sizes. I think it had a radio on it as well, but don't know if this is right or not. Next was cassette tapes that everyone loved, since they didn't scratch and you could copy them for your friends. Cd's replaced records and tapes and now more popular is the ipod or mp3 players.

While on stereos it reminds me of video players. In 1984 we bought a beta video player. It would play large video cassettes. The same size cassettes were used in video recorders, which then went to super 8 tapes that were around the size of a music cassette, then they went onto internal hard drives or sd cards. Video players, turned into dvd players and now onto hard drive recorders that will also play dvd's. 

Cars also took advantage of this technology. They had no radio, to tape players, cd players and now radio/cd/ipod players. 

The first telephone I remember, was my grandmothers. It was one that you had to wind the handle on and ask the exchange for who you wanted. I think I was around 6 at this time. We didn't get a phone until I was around 12 or 13. When we did, it had a lock so we couldn't make any calls out. The first thing we did when around 14 we had one we could make calls from, was to ring the time. Who remembers ... 'On the third stroke, it will be ... o'clock'? lol 

We got our first mobile phone around 1988 or 1989. It was around 10 inches long, 2 inches wide and about an inch and a half thick. Certainly not something you could throw in your pocket haha. How many remember that you had an aerial on them, that you had to pull out to get reception? All I can say is that I am glad they got a lot smaller. 

At school we used manual typewriters that meant you had to retype any document you made a mistake on. Electric typewriters came next, and they used touch typing instead of the pounding of the older ones. They also had a built in white out, so that if you made an error you could correct it. Then came computers.

Our first computer back in 1994, was a second hand DOS that I got from a friend. You would have to enter in commands so that you could use it to type up documents. Our first computer that had Internet access was back in I think 1995 (around when I first met you Bob). They were extremely slow and not many people had it. A whole new world opened up to everyone with it. You could 'talk' via icq to people all over the world. The monitors were big like the first televisions but on a smaller scale. I loved meeting new people and still am in contact with some of the first people I met - Bob, Kathy and Chris. 

Now there are laptops and broadband and in some areas cable. You can have Internet on your phone and the world has become a much, much smaller place. From needing to have a phone, television, video player, radio, etc we now just have one device that does it all and will fit in your pocket instead of your whole house. 

Won't it be exciting and amazing to see where technology takes us next!